Monday, August 10, 2020

Week 364: Staycation

This has not been the summer of travel. Between not being able to fly, not wanting to take on a big road trip, and not having anything much compelling within reasonable driving distance, we've pretty much stayed put. So, it was sort of a shock when I actually left the city of Madison for 24 hours. The rest of the state is still out there, as it turns out. On Thursday evening, Opa picked me up and we drove down to Lake Geneva, about 90 minutes away. On Friday morning, we got up early and walked all the way around Geneva Lake, a distance of 21 miles. Not how everyone would choose to spend their day off, but Opa and I know a good time when we see one. It was a glorious day out and a much needed break after a really busy week at work. Thanks to Papa Bear for keeping the troops in line while I was away!

On Saturday, more "travel," as we went down to Old World Wisconsin for a private tour, which is what they are doing since the park can't be open at capacity. We went to the shoemaker's shop, the blacksmith's shop, and the wagon repair shop, and did a hands-on activity at each. The kids were pretty thrilled about it--what kid does not dream of using a big hammer to strike red hot steel, with their parents' permission, no less? 

In CF news, a little bit of a mixed back. Lemon and I went and did his labs and x-ray. Everything worked like clockwork--why can't they be like this all the time? We went in, got blood drawn, x-rays taken, and a throat swab done, all in 30 minutes!!! Lemon was a champ throughout and enjoyed his McDonald's hash brown afterwards.

All of Lemon's blood work came back normal or near-normal. His GI doc sent me an email that a new specialist has joined the team and he will be transitioning Lemon over to her. So, we have an intake appointment set up with her for October, along with a Fibroscan, which is a different (newer? better?) liver imaging technology so maybe we will get a more detailed picture of what is going on there. Lemon's X-ray looked similar to March, maybe slightly better although it sounds like all of this is a bit of a judgement call. His culture came back with two bugs that he's grown before. But, usually we only see one of them in the culture and now the second one is there as well. 

So, between that, the x-ray, and the fact that he's been a little congested/throat-clearing of late, we decided that it might be time to do a quick course of antibiotics, to see if we can't tamp things back down a bit. He has been antibiotic-free since March (!) which is about as long as he ever goes between courses, and we'd like him to be in top form for the start of the school year. We decided to go with an oral antibiotic, augmentin, since that is both easier on Lemon than the inhaled and also more effective against one of the bugs. So we'll see. Doing the antibiotics is neither the obviously right thing to do, nor is it an obviously wrong thing to do. So, as with so much in CF, we'll give it a try and see what happens.

In domestic developments, we are one step closer to setting up a home-school type arrangement for the boys and a couple of their friends, more details to follow soon but I am growing increasingly optimistic that they may learn something in the 2020-2021 school year. And, our new stove arrived today so I once again have an oven that can produce heat.







I mean the home made english muffins and donuts were good, but I am ready for some bread!


Monday, August 3, 2020

Week 363: End of the summer

Hello August. Weirdly, fall was certainly in the air today here in the Badger state, where the temperature never even hit 70. A welcome meteorological reminder that the height of summer is behind us and we are now in the final stretch before fall. Or whatever the season is that follows this one, in these unusual times. 

Tomorrow Lemon and I will set foot in Children's Hospital for the first time since his bronchoscopy. Remember that whole episode? Definitely part of the before times, although just barely--as you may recall it was one of the last "elective" procedures they did in pediatric pulmonary before the shut down. Because of it, unbeknownst to us, Lemon missed one of the last in-person school days of first grade. So, now, we will return at last to have his labs drawn, his throat cultured, and his chest x-rayed. Lemon's doctor is all for telemedicine but thinks it is really important for people with CF to still get cultures done quarterly, so that any new bugs can be caught and treated quickly. I am in agreement with him on that, so it's worth the risk and the trip--the risks associated with not quickly noticing and treating a new lung infection definitely outweigh any exposure risk of being in the hospital for a few minutes. 

Meanwhile, the little events of quarantine life continue. I took Lemon to the dentist on Thursday, and he was happy to just roll along with waiting in the car, wearing a mask inside the building, getting whisked in, doing his x-rays and cleaning, and whisking out again. No cavities, phew, although lots of plaque. Since Lemon still doesn't eat as much as normal by mouth it has a tendency to build up. But, that's what the dentist is for and makes that trip worth whatever risk we're incurring there, I think.

I took the car in for some standard maintenance this morning, since it was due and I'd set up the appointment a while ago. It does seem a little silly since I literally have not put fuel in the tank since late March, during the brief period when gas was $0.99/gal. But, there is the theoretical possibility that we will start driving regularly again and would like the car to be working when we do.

The only unexpected drama this week was that this morning, I turned on our oven to bake something, it preheated normally, I put the thing in, and then within seconds there was a tremendously loud "POP!" followed by that smell of ozone and melted plastic that indicates electronic death. Sure enough, the control panel for the oven had gone dark and could not be revived. As I'm sure my fellow pandemic bakers will understand, this is a serious catastrophe. So, instead of whatever else I may have had planned for this morning, I fired up the internet and figured out who could install a replacement stove the soonest, which turns out to be a week from today. So, no oven for a week, which I just take as clear indication that this week at our house will be the week of the English muffin, the week of the crumpet, and the week of the doughnut.We'll make it somehow.






Monday, July 27, 2020

Week 362: Early to bed

As the reality of a year of virtual schooling has set in, we have begun the search that so many other parents have begun: the search for someone to guide our kids through their online curriculum for the year. This has proven to be surprisingly difficult, or perhaps not surprisingly, since everyone else is looking for the same thing at the same time. Still, having been around the block numerous times in terms of looking for in-home child care, I remain optimistic that something will work itself out somehow. Since our district does not yet know when school will start, I feel like we can't be in too much of a rush. Comfortingly, in the email we received today, they also don't know how many hours of content they will be providing per day (range: 1.5 - 6, very useful for planning purposes). They also don't know if the content will be "live" or recorded. Or whether there will be physical materials delivered to people's houses. Or what apps if any they will be supporting. So, there are a lot of unknowns.

We continue to try to at least keep the concept of learning alive for the kids, doing a little bit of something with them every morning. After a huge battle over the literacy app on Friday morning, Lemon and I tried just having him read aloud to me from a book this morning, and that went much better. We learned about several types of concept cars that never entered commercial production. More importantly, no fighting and no sadness. Of course, we still have to keep making progress in the app but I'm hoping mixing things up a little will make it less painful on the days where we do try to do the app. We shall see. 

Meanwhile, Papa Bear continues to work with Lime on learning to read. If he is to be the only kindergartener in the one-room schoolhouse (ie, our living room) with only a bunch of second graders for company, he will need to get up to speed quickly. Fortunately he's a pretty quick study and he does not like to be left behind, so I think actually the challenge of having the bigger kids around will be a good environment for him. And I'd rather him have some other kids around instead of just the virtual interactions with his classmates and teacher. Having had an unusual kindergarten experience myself (in a foreign country where I did not speak the language at the beginning of the school year) I have faith in the adaptability of kids. In another decade, this will just be a good story that he can tell his buddies, about the year he spent at home with the big kids. 

Other than these school related musings, it was another pretty typical quarantine week. The garden continues to be a great source of entertainment, and we mixed things up with a socially distant trip to McDonalds.I ordered a 10-lb box of jelly beans for myself, so that should get me at least through the end of the summer, I'm thinking (jelly beans being a foundational element of both marathon training and sanity maintenance, it's all inter-connected). Hope all of you are keeping well out there, we miss all of you and hope we can be together again soon.





Monday, July 20, 2020

Week 361: Video killed the radio star

On Friday, we had Lemon's first video visit with the CF clinic. And, I have to say, once you've tried telemedicine, there's no going back. No more being stuck in an exam room at the hospital for 2.5 hours for us! We were in the comfort of our own home, Lemon could run around and do what he wanted, and come in to say hi to his various providers as needed. Everyone was thrilled with his growth, he is now over 4 feet tall and over 60lb in weight. Amazing. So amazing, in fact, that maybe for the first time in his life we are making a conscious decision to back off on his tube feeds a bit to give him more room to eat and drink his calories. We're going to stick with 4 cartons of formula, but stop adding in the bonus 10 scoops of Duocal, knowing we could always add them back in during the winter if we have to. But he sure doesn't need them at the moment. 

We will have to go in to the clinic at some point in the next week or two to get his labs drawn and a throat culture done, but other than that it sounds like it will be all virtual all the time for the foreseeable future. The doctor things from now on, even in a post-COVID world, CF medicine will switch to being 2 or 3 virtual visits per year, with only 1 or 2 in person. Which makes tremendous sense given all the infection risks CF patients face every time they go to clinic. Almost causes one to ask why it took a global pandemic for this switch to become possible. But anyhow. One interesting little tidbit that we learned from his doctor: they have not had a CF kid hospitalized for an exacerbation since the pandemic began. So, that's one little positive side effect of all this social distancing we've all been doing.

Speaking of all virtual all the time, our school district just announced that the start of the school year will also be all virtual. So, that has simplified our decision making process about what to do about school in the fall, and we will just join the throngs of parents nationwide who are scrambling to put together some kind of learning situation for their kids. We've joined forces with a couple of other families in the neighborhood to try and make a go of this. How exactly all this will work is anyone's guess, but I'm sure something will happen. I'm a little sad that Lime will miss out on starting kindergarten at the school. On the other hand, though, is Lime a little sad that he won't be starting kindergarten at the school? Not in the slightest. Is Lemon sad not to be going back? Nope. So, I feel very lucky in those respects and will try to take the lead from their positive attitude. 

Other than those little developments, quarantine summer continues apace. Lots of playing around the house, coloring, standing on one's head (Lemon's particular favorite), spraying things with the hose, and so on and so forth. Lime has definitely caught the gardening bug, and we begin every morning with an inspection of our plants and the harvesting of whatever is ready to be harvested. Lemon has astounded me by eating pole beans from the garden, and even tasting a beet! I'm still working on them with the home-made bread and pasta, though.






Monday, July 13, 2020

Week 360: All around

Lime is 5. I can hardly believe it. My little buddy. He was very enthusiastic about his birthday, and although of course he missed having it at the beach, we managed to make it a pretty festive day nonetheless. We had a Zoom birthday party, as one does in this day and age, with dial-in guests from the east coast. He got to show everyone his many, many new transformers, and we all enjoyed his cake, ie brownie layers with frosting. Lemon came up with this idea last year and now the kids seem to have settled on that as the birthday cake of choice. Although I am slightly offended that they didn't pick one of my homemade things, I have to hand it to the food scientists at Ghiradelli, their product is quick and delicious.

Meanwhile, Lemon has his clinic visit coming up on Friday. This was supposed to be the big annual visit with the lab draws and the x-rays and all that. Since we were scheduled for a lab draw anyhow, I sent a message asking if we could have the COVID-19 antibody test drawn at the same time, just to see if that weird virus Lemon and Papa Bear had earlier in the spring was actually _the_ weird virus. But, sadly, no, of course that would be too easy. You see, Children's Hospital is located in a different building than the adult hospital. I mean, they are immediately adjacent and connected by both a breezeway and an underground passage, but still, different buildings. And, what with the laws of physics and such, it is impossible for a vial of blood to make it from one building to a different building. If I want the test done, I have to bring the blood to the adult hospital while it is still inside my kid, exposing him to whatever we encounter en route, so that it can be drawn by someone in the adult lab who is used to adult-sized veins. Nope.
This all became a moot point anyhow, because shortly after I got the response about how blood can't travel between buildings, I got a phone call saying that this visit is going to be a video visit. I think overall that's fine, Lemon is doing well and the benefit to being seen in person at the moment is pretty low. I am kind of curious to see how the collapsed area in his lung is doing, but really not so curious as to bring him in to the hospital. It'd also be nice to get updated labs, especially for his liver, but on the other hand, there's no rush there either. So, while I'm fine with not going in now, I don't hold out tremendous hope that 3 months from now (ie October, 1 month after the college kids come back to town), things will somehow be miraculously better and we'll be all set to go into clinic again.

Speaking of the fall, I've become increasingly pessimistic about schools reopening. It seems all but certain that at most our school will be doing 2 days a week in person, and 3 online. I wouldn't be at all surprised if they also do the first few weeks or months of the school year 100% online, given the way the state is trending at the moment. A month ago, I was feeling fairly certain that I would send the kids to school for whatever it was in session for. Over the past week, though, my thinking has really shifted and now I am leaning towards keeping them home. No matter what, they will be home a lot, at least 5 days a week by the look of it. And what are they going to get out of those 2 days in the classroom, besides infection risk? and is it worth it? I imagine at some point they'll get tired of being home all the time, but we're not there yet, so why not ride this out a little longer? Watch this space...






Monday, July 6, 2020

Week 359: More than meets the eye

Not going to lie to all of you, I am more than a little bit sad that I am not writing this post for you from Cape Cod, which is where we are supposed to be right now. I am 100% confident that we made the right decision by cancelling our trip, but the reality that we are not currently at the beach surrounded by old friends is settling in. I can close my eyes and see the blue hydrangeas and the funny little house we rented last year. We'll be back some day.

Of course, it being beach vacation week does mean that a rather momentous event is rapidly approaching: this coming Friday, Lime will turn five. Five! It is hard to believe. In addition to it being the half-decade mark for him, it is a big parenting milestone for us. We no longer have any preschoolers in the house. We have only "big kids." 
Lime's little personality has continued to blossom through the pandemic. His vocabulary is growing by leaps and bounds, a weird hodgepodge of stuff he picks up from us, the sitters, and YouTube. "Cytotoxic venom." "Supermassive black hole." "Tremendous size." He continues to be completely obsessed with Transformers, and knows every single character and all of its possible permutations with different armor and weapons and how the different individual transformers can combine to make other things. He's watched enough YouTube videos of people transforming their transformer toys that he can do a pretty effective imitation of the narration when he transforms his own toys. And, despite the fact that their relationship is not always peaceful, the first thing Lime does when he wakes up is to spring forth from bed and wake up his older brother so that the day's mischief can begin.

I feel like we are continuing to settle into this weird new lifestyle. I went to Costco this evening and noticed two things. First, that a spider had built a web connecting my steering wheel to the dashboard. Second, that buying a month's worth of supplies no longer felt like total siege preparation, but merely a "regular" grocery trip. As always, these days, it was a relief to get home with everything and know that I don't have to go back to a store again for several more weeks.


Other than that, it has been very hot and humid there the past week or so, which has made for not so great running weather but the garden is growing like gangbusters. Our pumpkin vine flowered, and the pole beans are starting to put out their first actual beans, the vines now being well over 7 feet long. I decided that I needed a little extra motivation to keep running in this weather, so I signed up for my first virtual event, a "run across Wisconsin," where you enter your mileage into a website every day and you have a fixed number of days to cover the distance between the northernmost 
and southernmost points in the state. And if you do it, you get a T-shirt. I'm pretty doubtful that I will be doing any in-person racing for the next 6-12 months, so if this is a way to keep on track, I'll take it!







Monday, June 29, 2020

Week 358: Accelerating

 It seems undeniable at this point that the pandemic is accelerating. The wistful hope that the virus would somehow die back in the summer heat has turned out to be just that, a pipe dream. I hope all of you are staying safe, staying home as much as possible, wearing masks, washing your hands, and all that good stuff. Of course I feel like I'm preaching to the choir here since you are the self-selected readers of this blog, but spread the word, you never know when someone you think is being adequately cautious is not.
Case in point: our afternoon sitter's friend. Our sitter herself is very cautious. But, on Tuesday she ran into a friend while she was at the grocery store. Thankfully, she was wearing a mask. Because, on Thursday, the friend contacted her to say, "Oh, by the way, I wasn't feeling well Monday or Tuesday when I saw you and so I got a COVID test and it came back positive." Yikes. Luckily, even though the friend had the highly questionable judgement to leave home while not feeling well, at least the friend was also wearing a mask. So, instead of coming to work on Friday, the sitter went to our local testing site and got tested, and very luckily, the test was negative. So, we most likely dodged a bullet there, but that one definitely felt a little too close to home for comfort. And makes me dread to think what will happen when an additional 30,000 18- to 22-year-olds roll back into town come fall. Assuming they come back, of course.


Some other interesting COVID-adjacent happenings: I went into my healthcare account to check to see when Lime's 5-year-old check-up was. Since I was there, I figured I'd check Lemon's too, but didn't see anything, so I called the pediatrician's office to see if they had it. I thus learned that not only did they not have anything on the books for Lemon, but that I couldn't actually schedule anything, and that they were canceling Lime's appointment also. I am to call back in August to see if they are making new appointments at that point. So, that's interesting. I mean I suppose overall the chances of something major being caught at any individual well-child visit are low, but we do them for a reason (right?). So, all the kids with birthdays between March and September will be starting the school year without their annual check-ups? Ok.


Meanwhile I had the opposite experience on my own checkup. The doctor's office called me to let me know that due to COVID the doctor was only doing clinic visits 1-2 days per week, and they only found out a week or two in advance which days. So, they gave me the choice of keeping my original appointment, knowing it could be cancelled at the last minute, or rescheduling it to two weeks from today, when the doctor was now booked to have a clinic day. I like certainty, or at least the illusion of it, so I went with the latter. 
We do have a clinic visit coming up for Lemon next month as well. Our last one was virtual, and my understanding was that this one was to be in person since he is due for his big annual appointment with x-rays and lab draws and everything. I guess we'll see what the situation is like in a few weeks. At the moment COVID is definitely spreading in our community, and if that trend continues, I won't be eager to head over to Children's Hospital to spend a few quality hours monkeying around, seeing a dozen different care providers. Not when things are going so well for Lemon, who finally hit a massive 60lb earlier this week. I guess at some point we will have to take him in for something, but I am in no rush whatsoever, and feel very lucky to be in that position.

Given everything that's going on, I can totally relate to Lemon's fantasy of building himself a houseboat and sailing away to explore England!